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Bor Verkroost isn’t dying, but the 35-year-old Dutchman wants 2014 to be the last year of his life.
Verkroost, who is suffering from a debilitating skin disease that means he is in constant pain, can make this decision because euthanasia is legal in the Netherlands. The law requires his doctor’s approval for this irrevocable step, but he did not fight Verkroost on the idea. Rather, he is ready to help his patient step out of this life at Verkroost’s signal.
Cases like Verkroost’s lie at the heart of an ongoing debate in the Netherlands about how to define the right to die. Some campaigners believe the country is still too conservative and want to expand euthanasia laws to include the mentally ill and children. Others fear that that is going too far and that the current system already makes the choice to die too easy.
Meanwhile, the practice is on the rise.
For Verkroost, the reasons to end his life seem compelling. He was born with epidermolysis bullosa (EB), an incurable condition that causes external and internal skin blisters. He has undergone 61 surgeries, including one in 2009 to amputate three fingers. He has skin cancer that can only be cut away, and it’s spreading. One of his hands has scarred into what he calls a “permanent fist.” The other cancerous hand lives in a bandage.
Every day begins with hours of skin care and personal care with the help of an aide.
“Socks and buttons are my weak points,” he told Al Jazeera.
It is not all bad. Verkroost is able to gets around his Amsterdam apartment by scooting about on a chair with small wheels. He texts, he types, he talks on the phone. All the while, though, he is in great pain.
Born into a life physically defined by EB, Verkroost said he has managed his struggles with generous doses of dark humor and medical marijuana.
But he’s had enough.
Since the amputation of his fingers — whose cremated remains fill a small porcelain container in his living room — he’s spiraled downward physically and emotionally.
Although he has many friends, his world has grown smaller. He said he is lonely, and he longs for someone to love.
“Love would be the only reason to keep on fighting,” he said. Without love, his life has “become hopeless and unbearable,” and he simply doesn’t want to live beyond 2014.
‘It shouldn't be easy’
Verkroost posted his euthanasia statement on his Facebook page to start a conversation. His move was well timed; the Netherlands is in the midst of a national discussion about euthanasia — not because the system doesn’t work but because it works so well. The Dutch choose to die by clear guidelines and review procedures. While much about euthanasia is obvious, the main qualification for voluntary death, “hopeless and unbearable suffering,” remains subjective, and the country is grappling with its end-of-life boundaries.
Even in the clearest cases, such as end-stage terminal cancer, there are rules and regulations.
“Euthanasia can’t be an impulse,” said Petra de Jong, director of Right to Die Netherlands. “It shouldn’t be easy.”
Accordingly, Dutch law requires that each euthanasia or physician-assisted suicide request meet six specific criteria. The patient’s treating doctor and another, independent doctor must authorize the request, and only a doctor may administer the lethal dose, or one must stay with the patient during physician-assisted suicide.
In 2012 the 4,188 deaths by euthanasia or physician-assisted suicide represented 3 percent of all deaths that year, which is OK with most Dutch. According to a 2013 EenVandaag poll, 91 percent favor assisted suicide in cases of hopeless and unbearable physical suffering. Some 85 percent support euthanasia for patients with dementia who don’t want to live with the condition, and 56 percent said they favor legalizing a suicide pill.
According to de Jong, Right to Die’s members favor such a pill.
“I don’t think it’s suicide,” she said. “I think it’s a well-thought-out death wish.”
De Jong’s goal is to secure a plethora of options for people considering ending their lives. For her, it’s about death with dignity.
“We know for sure that we are going to die, and the way of dying is the only thing we can manipulate,” she said.
How far people should go to orchestrate their own deaths came into question in January, thanks to one of Right to Die’s initiatives: the Life’s End Clinic. Established in 2012, Life’s End lets people appeal denied euthanasia requests. Life’s End is not an actual clinic. Rather, its ambulant teams of doctors and nurses make house calls, speaking with patients, reviewing their files and deciding after several conversations whether to override another doctor’s euthanasia denial.
‘Don’t want to live like that’
The news that the group euthanized or assisted in the suicide of nine psychiatric patients last year was controversial, but nothing was legally amiss: Hopeless and unbearable suffering does not have to be physical. Some doctors and psychiatrists agree that patients with severe emotional and mental angst and no more treatment options should have euthanasia as an option. Each year 300 to 500 psychiatric patients request euthanasia, and over the past 15 years, doctors have granted 77 of those requests. The majority of deaths, 42, occurred last year.
Behind this increase is the spreading view that euthanasia offers a better death than suicide — which Jeannette Croonen and Philip van Eekeren of the Euthanasia in Psychiatry Foundation support.
Croonen’s daughter, Monique, and van Eekeren’s daughter, Lotje, committed suicide in early adulthood after years of struggle with mental illness. Van Eekeren speaks softly as he talks about Lotje, whose oscillations between depression, psychosis and calm periods became so awful that she tried to end her life twice. The second attempt, when she jumped from a building in 2009, proved fatal.
Van Eekeren cleared his throat as the story became intense.
“We all know pain,” he said. “But I could never imagine pain that unbearable.”
The question “Why did my child have to come to this end?” haunts Croonen. Monique killed herself in 2008 by putting a bag over her head in her mental institution bedroom.
“Our children don’t want to die. They just don’t want to live like that,” van Eekeren said.
He and Croonen advocate listening to psychiatric patients, taking consistent death wishes seriously and making sure euthanasia for the mentally ill isn’t conversationally taboo.
Although the Netherlands Psychiatric Association recently released information on dealing with psychiatric patients’ euthanasia requests, their tone is not optimistic that euthanasia will help matters.
“The possibility that psychiatric patients may qualify for euthanasia will most likely not result in fewer suicides,” according to the group’s guidelines.
Age of consent
Nonetheless, de Jong sees a national shift, with more psychiatrists agreeing that there are “incurable psychiatric diseases with unbearable suffering in a long-lasting way,” she said.
The challenges of deciding if someone else’s pain is severe enough to warrant death means one thing for certain: The current law does not guarantee death on demand.
“Euthanasia is still punishable, but a lot of people (think) that it is a right,” said Esme Wiegman-van Meppelen Scheppink, director of the Dutch Patients’ Organization. “The euthanasia law is … a law for doctors, not for autonomy of people.”
Adhering to Christian ideology, the 62,000-member-strong, organization is against euthanasia but does not support prolonging life at all costs.
“Not every medical treatment is useful and helpful. You can say no,” said Wiegman-van Meppelen Scheppink, who is a former parliament member. She worries about Life’s End Clinic, which she said is “making a statement — and it’s very dangerous — that euthanasia is normal and that when you have a problem with your doctor, you are welcome there.”
The other thorny area of debate is that of euthanasia and children. Although euthanasia among adults in the Netherlands rose by 13 percent last year, the practice is almost unheard of for children.
When Belgium legalized euthanasia for children last month, the Netherlands reflected on its own stance. Dutch law forbids euthanasia for children younger than 12, and euthanasia for 12-to-16-year-olds requires parental consent. De Jong doesn’t see a push to follow Belgium’s lead.
“Children below the age of 9,” she said, “that’s difficult.”
But Eduard Verhagen, head of pediatrics at the University Medical Center Groningen, disagreed.
“I have known so many 9-year-olds who are so wise,” he said.
A father of five children, Verhagen specializes in pediatric palliative care and end-of-life issues. He was integral in establishing the Groningen protocol, which provides euthanasia guidelines for infants. He supports Belgium’s recent decision.
“It’s fair to have euthanasia available as an option (for children),” he said. “Having it as an option often leads to people not looking for it. It gives them strength, gives them hope.”
Sitting in his apartment with his cat milling about, Verkroost echoed this feeling. Knowing that the death of his choice awaits him gives him a feeling of calm and self-respect.
“I want to be able to look right at myself in the mirror,” Verkroost said, “and know I didn’t let myself suffer endlessly.”